IOM Bias: "The Cause(s) of Chronic Multisymptom Illnesses Following the First Gulf War"

@Ren, this is exactly the kind of information we need. I will be busy for at least three days with real world issues, starting in about an hour, but after that I will be looking at all this more closely.

The most recent Gulf-War-and-Health text (2013) mentions "methodologic flaws" in the Summary (p.8), and then a search for "methodologic flaws" brings up p.191 and seems little different from that info presented in the Summary. But should this assist in understanding how IOM thinks... http://www.nap.edu/openbook.php?record_id=13539&page=191

"Many of the studies of treatments for CMI reviewed by the committee had methodologic flaws that limited their usefulness for the committee’s evaluation... (p.191) See also "Recommendation."

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Not to discourage anyone but to the IOM, "methodologic flaws" is any research that proves an organic eitology to ME/CFS and therefore lacks userfulness for the committee’s evaluation. Those that are without "methodologic" flaws is Pace, CBT, GET, talk therapy, meditation, yoga or any other psychogenic or alternative medicine techniques or modality.

The IOM is nothing more than a kanagroo court with the fix already established and the outcome known. The IOM is the policy arm of the global corporate medical/insurance/disability conglomerate and the APA which spends hundreds of millions of dollars $400 - $500,000,000 each year on lobbyists, pr firms, pac and special interests groups that fund campaigns of elected officials to pass legislations favorable to their positions. They get the APA to come on board as an alternative to medical treatement as most health coverage plans have limited or non-existent mental health coverage. This way, the insurance companies rake in billions of dollars in revenues each year.

I think Ramsay beat the ICC panel by some decades. My point is that there is increasing evidence this is a correct view, justified by increasingly validated objective science. I also observed it personally in my own case. I expect that as the science advances in the next decade, this will go from tentative to almost certain. There are already multiple signs that the biomedical researchers have had enough of the bad science crowd, and that did publicly start with the ICC, though I think it began with Ramsay.

The IOM is nothing more than a kanagroo court with the fix already established and the outcome known.

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The pharmaceutical industry was as big. A decade after the cause and cure for most gastric ulcers were found, they lost.
I do think we need to be pursuing criminal charges in addition to class action lawsuits for many of these issues.

The biomedical research is severely hampered, but we will get there eventually. The question is when? In five years? Ten? Or beyond the lifetime of everyone currently in this debate?

In the end I think this will go one of two ways. Either the entirety of Western civilization becomes police states that murder millions of their own citizens, or we win. Its just that many of us, if not most of us, will have died, still sick, along the way.

If anyone doubts the police state angle, just imagine if the UK is given a whole generation to pursue its campaign against the disabled. The Lib-Dems have to go, but I am not sure there is a viable alternative in UK politics.

The pharmaceutical industry was as big. A decade after the cause and cure were found, they lost.
I do think we need to be pursuing criminal charges in addition to class action lawsuits for many of these issues.

The biomedical research is severely hampered, but we will get there eventually. The question is when? In five years? Ten? Or beyond the lifetime of everyone currently in this debate?

In the end I think this will go one of two ways. Either the entirety of Western civilization becomes police states that murder millions of their own citizens, or we win. Its just that many of us, if not most of us, will have died, still sick, along the way.

If anyone doubts the police state angle, just imagine if the UK is given a whole generation to pursue its campaign against the disabled. The Lib-Dems have to go, but I am not sure there is a viable alternative in UK politics.

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The police state won't be an arm of regular law enforcement but a private corporate police. And we will have Milton Friedman to thank for it.

I know I already Tahoe and FDA. Maybe we can create a thread where we compile lists and ask for comment, then see who has them or can find them. If there is overlap, no harm done.

Frankly, I think the whole project is ridiculous. You can't make a criteria from reading studies. But, I guess we have to do this if we can't stop it.

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Most studies with just symptoms have a very low evidence rating. Its not going to be valued highly I think. That is a big problem with some of our research.

What will rate very highly is objective biomedical findings of high prevalence that have been replicated independently. I am not sure we have anything that fits there. Some of our researchers have advanced upon their own studies, but its not well replicated, or for things like NK cell studies the outcomes have considerable variation. Variation counts. If results are heterogeneous then a study may be downgraded in review.

I guess it depends on how they view evidence. If one is creating a criteria for an illness that has no biomakers, then the evidence for symptoms would be whether the pattern differentiates the patient group from other other groups. One does not need evidence for the cause of the symptoms, because that is not yet known. Most illnesses are classified this way before the underlying mechanisms are known. OTOH, I have so little faith in medical professionals these days that I doubt that many will be focused enough to remember this.

I guess it depends on how they view evidence. If one is creating a criteria for an illness that has no biomakers, then the evidence for symptoms would be whether the pattern differentiates the patient group from other other groups. One does not need evidence for the cause of the symptoms, because that is not yet known. Most illnesses are classified this way before the underlying mechanisms are known. OTOH, I have so little faith in medical professionals these days that I doubt that many will be focused enough to remember this.

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This is very interesting. Do you have any stuff to read on this (or to cite to). I think this will be an important point to emphasize.

Someone has told me, not sure if they made this public on the forums that he has drafted an article on how diagnostic criteria USUALLY get drafted in other diseases, but is shopping it around. I am encouraging him to get it out there sooner rather than later bc its useful info.

In any event, we need info on this subject- how they usually get drafted. Couldn't find anything with google search. This person used pubmed. someone else posted info on MS criteria that was useful. I am going to start a new thread on this topic to have this info in a new place.

We want to keep these people, should this go down, focused on the proper way to draft a case definition, and not sidetracked with nonsense about fake treatments, fake criteria and untenable supposed requirements for criteria.

As to that last point, an article of criticisms on EBM, mentioned there were EBM standards for forming diagnostic criteria. There was no cite for this as far as i could tell. I will attach the link here. good article.

As I think i understand it from Alex, though I have seen different understandings on this point in the very limited amount of reading i have done on EBM, EBM presents a ranking of broad types of data based on the general supposed reliability of the method used to obtain that data. And in situations in which the only evidence is that of a low rank, such as clinical observation, c. expertise and c. opinion, this evidence is NOT ruled out. THat is, in this conception of EBM, EBM does not set a threshold for evidence that may be considered, it simply ranks the type of evidence. So in a situation where the only evidence is clinical expertise, that may form the entire basis of a report (perhaps with an asterisk that this type of evidence is of low reliability according to EBM standards).

JR wrote, "...(perhaps with an asterisk that this type of evidence is of low reliability according to EBM standards)."

Can/should there be an asterisk as well that addresses funding bias?

As able, I'm still trying to plow through the GW&H CMI Treatment text. That committee though used a set of search terms to gather info. However, from a superficial reading, I didn't see that they explained how/why they chose the terms they chose. A biased set of search terms is, of course, going to yield biased results. I just thought this may be something we have to watch out for as well.

Also, I can do a search of course and see what I can find - but I thought someone (Eco? Alex? can't recall) mentioned that a RAC text was not allowed as evidence for something (GWI/CMI) because it was considered biased. Does this ring a bell to anyone? And can you say, just simply, what the alleged problem with this text was? Thanx!!

I guess it depends on how they view evidence. If one is creating a criteria for an illness that has no biomakers, then the evidence for symptoms would be whether the pattern differentiates the patient group from other other groups. One does not need evidence for the cause of the symptoms, because that is not yet known. Most illnesses are classified this way before the underlying mechanisms are known. OTOH, I have so little faith in medical professionals these days that I doubt that many will be focused enough to remember this.

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There is an issue of what kind of Evidence Based Medicine the Institute of Medicine panel will use. So many cases now consist of opinion of what evidence should be. EBM is largely self regulated, which means not much regulation at all.

Most of my commentary is based upon formal definitions of evidence rankings appearing in various places including the Cochrane Collaboration. Whereas these rankings might be used against us it is clear that some kind of ranking will occur, and this can work for us as well as against us if we are prepared.

Just throwing another wrench out there. I mentioned earlier that I keep seeing the term "patient-centered care". And so I wondered how "evidence-based medicine" and "patient-centered care" function together. If you do a search of these terms together, different papers come up. An abstract for one (I just skimmed) describes "evidence-based medicine" as having a biomedical perspecitve, while "patient-centered care" has a biopsychosocial emphasis (explains why I keep seeing the term, I suppose). So - it seems that the "Dark Side" is dominating / seeking to dominate both "paradigms" with a biopsychosocial focus.

I'm not sure what to do with this info, yet. But it seems that we the patient community need to define what patient-centered care means to us and our treating, experienced physicians. And we need to define (as has already been said) the evidence-based medicine that supports our patient-centered care needs. And perhaps come up with our own set of search terms. (Again, just brainstorming.)

Patient centered care in its current biopsychosocial form is a joke. There is nothing new about patient centered care itself, but the biopsychosocial overlay is in danger of making it both evidence-lacking and nonscientific.

There are, from my perspective, four separate movements in medicine.

1. Mainstream medical science, and this includes to some extent traditional epidemiology.
2. Patient centered medicine, so-called humanistic medicine, that is probably more than a century old.
3. The biopsychosocial movement which is largely nonscientific and based on unproven and frequently unprovable ideas. Much of it fits many definitions of pseudoscience.
4. Medical management systems, which draw on the above three. These are managerial efforts, and not science. NICE is an example, but so is any Health Maintenance Organization (HMO). Evidence Based Medicine is firmly in this group.

Much of psychiatry falls under a fifth heading, but I am still thinking about that. In some ways it can be put right alongside the BPS movement, but it other ways there are signs they are attempting to become more scientific. As I see it psychiatry may itself have four or five different major movements within it, and these differ from each other.

However there are complications out there that I have yet to really get a perspective on. Science Based Medicine is an attempt to turn EBM into something more scientific for example. There are crossover disciplines of medical management and economics as well that I have not really begun to investigate.

PS I very rarely talk about patient centered medicine as its standardly taught in most medical schools. Its the old way of doing things. It was in competition with BPS, but I guess that might be changing.

This is very interesting. Do you have any stuff to read on this (or to cite to). I think this will be an important point to emphasize.

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No, this is based only on my recollections of the history of diseases. Like Diabetes, which was first described as frequent urination, then frequency plus sweetness. And little by little clinicians and researchers wrote papers, communicate with each other, and refined their criteria based on observation. And because the symptom pattern was consensually defined, it was possible to eventually connect a causal observation in animals that seemed to match the criteria in humans. And this then more discoveries. This seems to be the history of many illnesses. One person describes it, others add to it, and collectively they refine it. And the only evidence for the criteria is that they are all seeing the same thing first hand again and again. This stage in illness research is not one that can be advanced by bureaucrats doing literature reviews. It it has to be defined by people on the front line who not only know the literature, but also have years of experience with repeated observation. And it is actually possible to test the observations. Go back to the patient population that led to these observations and see if the conclusions fit.

I want to add something that worries me. We are trying to come up with evidence for the creation of a criteria. We don't know who will be there, and whether they will think sensible. If they think CFS is a bunch of crap, they might also need physical evidence that might not qualify for a criteria. For example, various heart studies that show similar things. The frustrating thing is this is not interactive, so there is no way to deal with their objections. We have to second guess everything.

@Alex, another illuminating post. pls tag it so you can put it in the blogposts or dedicated thread or wherever central. All these posts of yours explaining things are a vital resource.

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I am working on a blog on all this now, or perhaps the header for a new thread on the ins and outs of Evidence Based Medicine and how we can use that to work for us rather than against us. Maybe I will even submit it as an article to PR if its good enough. Until Sunday I had been in decline. Last two days I have improved, despite that I have had two hectic days lately. Here's hoping.

@Andrew, what you are saying is correct prior to EBM. EBM has a rather different view on things. I am planning to email a dedicated task force in the Cochrane Collaboration and see if they can point me to documents/papers etc. This is their task force for diagnostics and tests: